“On Edge” by Cheryl Marie Wade

God forbid we human beings should ever have to get up close and personal with our unwieldy, messy, smelly humanness. In every way possible, this culture’s rules and values distance us from the realities of our own bodies in all their glorious imperfection. Just flick on the TV any time of the day or night and you’ll be bombarded with messages about the necessity of looking perfect and smelling better. It’s presented not as an option, but an obligation. Of course we want to hasten death; of course we want to make it easier for Cripples to die. Out damn spot. Out.

I don’t think it’s just coincidence that this urgent, zealous drive to give us more ways to opt out of life comes at a time when more and more of us are visible, living in community, being “in the face”, so to speak, of able-bodied assumptions about normal. And not just the us that can almost pass as AB, but those of us whose bodies are wildly uncontrollable, we of the drooling, spazzing, claw-handed variety of Cripple. And instead of trying to fade into the nooks and crannies as good Cripples of the past were taught to do, we blast down the main streets in full view, we sit slobbering at the table of your favorite restaurant, we insist on sharing your classroom, your workplace, your theater, your everything. The comfort of keeping us out of sight and out of mind behind institutional walls is being taken away. And because there is no way for good people to admit just how bloody uncomfortable they are with us, they distance themselves from their fears by devising new ways to erase us from the human landscape, all the while deluding themselves that it is for our benefit.

(Emphasis in the quote is mine.) That’s a quote by Cheryl Marie Wade in On Edge, that describes a frightfully real phenomenon. When it is not an option to lock us up and separate us from society (and it still often is, but it is for less of us), people, with the same prejudices that lock us up to begin with, try to justify our quick-as-possible death.

Moreover, people are terrified of the things I described in my last post. Terrified in particular of having bodies or minds that don’t stay tidily in control, in a society that is right now far more of a control-freak society than it was when Wade wrote that article.

When Wade (who also wrote the great poem A Woman With Juice) wrote that article, I was still in the out-of-sight out-of-mind category that she describes. Now, I’m not. But I think a lot of people would be more comfortable if I, and everyone else like me, were. I don’t think all of them think of themselves as hating us. I think we make people highly uncomfortable merely by existing in their presence. We bring up too many questions, remind people of too much, and break too many rules devised for a society being run without us. And, as she mentioned, since nobody is willing to admit their discomfort, they do a lot of very nasty things while distancing themselves from the nasty things they are doing.

That’s of course not the only reason. Wade goes into many other reasons in the article. But I’ve noticed that merely being plonked into a society that is not designed for me, that in fact is actively hostile to people like me, is not the same as living in an inclusive society. It’s not the same as living in a society where people have shed their prejudices about us, or where we have enough power and respect to avoid some of the more awful fates (including re-institutionalization) that are accepted for us by others. It’s just a change of address. And it’s just the beginning.

I have to wonder how much of these attitudes are behind the widespread acceptance of the murders of Tracy Latimer, Charles-Antoine Blaise, Katie McCarron, and so many others, and this latest attempted murder of a little girl with cerebral palsy.

Someone pointed out in my post about Katie McCarron that it’s not just beautiful, young people who shouldn’t be murdered. It’s also those of us who aren’t cute anymore, those of us who have ‘severe behaviors’, drool, need help going to the bathroom, or whatever else is different about us. I think people are more comfortable with the murder of a disabled person than a non-disabled person, but also more comfortable with the murder of one of the disabled people with an ‘undesirable’ body than those who are closer to standard-issue. A lot of effort has gone into distancing Katie McCarron from a stereotype that she has never come close to fitting. But those of us who do fit it more than she does (of which I’m definitely one), are real people too. The misplaced discomfort and disgust we are greeted with should not rule our life and death.

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About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed.
I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources.
I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line).
I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness.
I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice.
I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first.
My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music.
Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few.
I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her.
As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days).
I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own.
Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love.
My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed.
You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better.
Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

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As Charlie has gotten older, and still has “severe behaviors,” bathroom “mishaps,” and plenty that makes him different (and Charlie), I have seen less and less sympathy thrown his way, and more and more annoyance (a nice word). It’s one thing to be little and “cute” and autistic, and another matter to be a big strong boy, autistic, and, yes, not “cute” anymore.

What seems eerie to me, is that I started up a blog on account of two people, John Donovan and Ballastexistenz. The former, because he encouraged me; the latter so that I could comment on her (temporary) Blogspot blog. Miss B and The Donovan both come from ways of living, or having to live, that can get one killed at any moment. That’s serious. Maybe that’s why I like to read y’all, to remind myself that my own (very minor) troubles are not so serious.

Oh, if some money could help with yer troubles, B., I have a little bit. Sending you some money would be pure self-gratification on my part. I like your writing, and want you to have every accommodation to help you feel good enough to continue with it. Aside from any other good feelings I may have for you, of course.

I don’t think having more money on my part would help much of anything related to this kind of prejudice. And as far as having problems writing because of how my body’s acting or something, that won’t be helped by money either. I’m not dying or anything, I’m just aware (like Wade is) of the fact that lives like mine are not particularly valued in the world. I’m not particularly unhappy or anything either, if that’s what you meant by troubles.

Hope I’m welcome. I’m a parent of a still cute little boy with autism. Of course, I’m someone who doesn’t need to be convinced of the inherent worth of someone with autism, and I’m constantly amazed and the richness of Nigel’s live, as well as the richness he brings to mine. I also believe Nigel may very well learn to cope with living with the confines of societies norms, even though his verbal language development is slow and he’s developmentally behind according to “typical” standards. I have a question though regarding some of the thinking behind this (can I say?) movement. It’s purely an informational question with no opinion behind it.

Is there any notion that we are somehow doing something wrong by trying to increase our son’s awareness of the other humans around him with various forms of therapy? What about behavior modification techniques to move him towards bathroom independence? We don’t want to clean up huge messes, and like it or not, others won’t want to either. We KNOW, he wants to be a good boy, and doesn’t want to inconvenience us.

I’m the first to champion and appreciate his special, unique way of relating to the world, but I also feel there’s something to be said for integrating with society. It seems to me that throughout human evolution, societal relationships have been the key to survival and advancement. Obviously, it’s our collective responsibility to keep society enlightened and inclusive but we need each other and even “typical” children have to learn to conform to standards, right?

This is a question from a parent whose feeling his way in this role as protector and educator of a child with a “minority configuration to his sensory aparatus” (can we put it that way?). So any input would be appreciated. Thanks.

I probably can’t do your question justice at the moment, but if you look through my blog, particularly in the category Autistic-Style Life Skills. Some posts in that category will be totally irrelevant to what you’re talking about, but some will be highly relevant.

It’s hard to describe simply and shortly though, it requires too much of “There’s an assumption in this that I don’t want to reinforce by answering the question as asked” stuff and that takes time.

I will say though that given the length of our interviews (over an hour each, I think) versus the length of the program (15 minutes), you weren’t going to get a lot of nuance, so, I’d suggest reading here, and reading Jim Sinclair’s web site where xe also talks about a lot of these things (xe and I differ on some of this, but have a lot of agreement on basic principles), and maybe reading the Autism Hub which is a blog hub containing autistic people, parents, and a few professionals. (Again, not everyone there agrees, what’s in common is a valuing of autistic people as autistic people.)

The shortest answer I can come up with, is that I don’t really see autistic people as separate from society, so I can’t see anything wrong with integrating into society, but I don’t think society is very integrated to us, at all, and I do think that disabled people are sort of over-modified in order to fit a very narrow non-disabled norm for the comfort of non-disabled people. But that doesn’t even begin to describe what I mean.

And my trouble with ABA is that it doesn’t seem to teach in a way that is sustainable to a lot of autistic people. It may not be visible on the outside, but a lot of things taught that way require more conscious effort, and are more likely to fall apart under stress. (Autistic people need generally to function as efficiently as possible with as little waste of cognitive space as possible, and I find most ABA to teach us in inefficient ways, even if it does produce outward results.)

Someone pointed out to me that the way I use my body is very frugal. That is true of mind as well. ABA is not generally very frugal.

I will say that I agree about ABA in general. We didn’t see much benefit in it at first. We frankly felt that our son was too smart to go along with a strictly skinnerian approach. However, most of your comments can be applied to many, many non-autistic people, within the context of the traditional public school curriculum. Those with minority learning styles have always had a hard time in traditional learning environments. I don’t want to draw too much of a comparison between autistic people and say, people with dislexia. Many of the things you allude to will clearly take me the rest of my life to understand fully.

We finally went with a mixed approach (ABA and DIR/Floortime), with our son, that focuses primarily on encouraging initiative and self motivation. We can see that our son actually likes it when he is able to achieve in one program or another. At the same time, we definately couldn’t see much value in the strict ABA approach.

As regards the issue of society not being open to including people with disabilities…well, I didn’t know how true that was until we realized our son would have a disability. And I’ve come to realize that viewing his disability as a disaster is completely wrong. He’s a gift exactly as he is and being different would make him…not him.

I still think giving him all the support we can now will help to limit his disability in the future, like working a muscle he’ll have to use in the future.